I'm not like you: Part 3 (re-post)

Well, I said there'd be a part three to this.. so now no-one can call me a liar. Are you calling me a liar? Yeah.. you.. in front of your computer... well no more!



Ok...that was a weird intro.

So this is going to be the third post in this series (it's a series now) of posts I've done about my condition, and how it affects me. Now, this isn't a "oh.. everybody needs to feel sorry for me because I'm different" thing, I don't feel sorry for myself, so why should anyone else? Nor am I saying that my problems are any worse or harder than anyone else's who has to deal with disabilities or impairments. This is simply my way of getting information about my condition out there, and also maybe give my friends a little more understanding about all this stuff.


The other thing that I distinctly remember from writing the last two posts, is that I actually cement things in my head by writing them down, and in a way, I learn things about myself by writing about them.



So it's been about a year and a half since I wrote part two. I've learned quite a few new things about my condition, and made a few new changes in my life to help better deal with it as well. And for the most part, it's all been a success.


One thing that I'm not sure I mentioned in the first two posts, is about headaches. I used to suffer regular migraines, and do still occasionally get them. I get really bad pains in my neck which radiates up to my head mainly. But, the reason that I used to get them so much was because of my hair, and how long it was. Tying it back 90% of the time put extra pressure on my neck (as I'm sure it does for everyone else), and adding that to the muscle aches and pains, made getting a headache quite an easy thing.



So I guess that's an explanation for people who didn't know as to why I cut my hair off a couple of years ago. That and well.. your wife leaving you makes you want to make some changes after a little while.


As I said, I made some changes in my life to help with my condition. The first was that I made a pact, or a commitment, to get on my treadmill every single day without fail. And since I decided that, I have walked on that treadmill no matter what, every day for 518 days. Some days I've only managed two minutes, or five minutes, but for the better part, I've been doing my 30 minutes every day.


I can't tell you how much this has helped. Actually, I have a blog, so I can. I can boil it down to this. If I hadn't started that, and walked every day for as long as I have, I wouldn't have a band. I physically would not be able to handle playing gigs. I'd be in so much pain. I've talked before about things like cleaning my teeth can wear me out. Yeah, it can, when I don't stick to my exercise.



Let me just clarify though, the walking doesn't build fitness. Things that people without my condition wouldn't think twice about, like a shower, or doing the grocery shopping, they still wear me out. The walking builds conditioning and stamina to allow my body to function better. So I may get tired out, but I recover quicker, and I've also noticed that I can do things for longer, like playing gigs or rehearsing, and even the grocery shopping doesn't tire me out quite as much.


That was the biggest change definitely, but I've made some smaller ones. Diet is another big one. This one is really recent actually. I was talking to a vegetarian actually (don't get me started.. ) and they were trying to tell me I should find vegetarian alternatives for my protein.. after I'd explained that it HAD to be animal protein, not things like nuts, or tofu or any other vegetarian crap. (seriously, don't get me started.) But she asked me why it had to be animal protein, and I had no answer other than "That's what my specialist told me". I had theories though... I thought maybe it had to be animal protein because it's made of the same stuff my muscles are made of essentially.



But I wanted to find out more, so I was researching diets associated with my condition. What I came across was really interesting. It turns out that a high protein but also high FAT (yup.. high fat) diet tends to work well for people with my condition. And, I can totally attest to that.


Let me give you an example, because I'm sure you're sitting there going "if you eat a high fat diet, you're going to get fat".. or "but there's good fats and bad fats"... or "you're just using it as an excuse to get an extra quarter pounder, fatty". Well, let me tell you something, my normal bodied friends...

When I got back from New York in 2006, I weighed about 115 kilograms. I made massive changes to my diet based on the information from my specialist, but because I was (and am) on a limited budget, I couldn't get lean meats in big enough quantities. Remember, I have to eat 500 grams of "animal protein" a day.. at least. That is the equivalent weight of 4 quarter pounder patties plus the cheese.


So my diet consisted of those Twiggy Sticks (salami sticks essentially), very little bread, as much protein as I could get for dinner (I think there were things like homemade pizza.. but it was 6 years ago..), but my main point is, every 3 days or so I'd have McDonalds. I would have a Big Mac, a Quarter Pounder, and a McChicken.


You're all sitting there saying "that's too much take away". FOR YOU IT IS. But I'll get to that.


For me, it worked. I ate a high protein, and, without really meaning to, a high fat diet. I walked on my treadmill 2 out of every 3 days for only 10 minutes each day (not as much as I'm doing now), and in 6 months, I went down to 100 kilograms. So all your "too much fat" arguments are invalid.


Now this is where I get a pet peeve of mine off of my chest. Yes, eating take away is bad. Yes, a high fat diet is bad. But the problem is, every single person I've discussed this with is looking at it from a "normal" person's perspective. Your bodies work properly. Mine does not. It (in my opinion) has compensated for that by being able to process fats and protein better. I look at it in the same way as a blind person's other senses are heightened. My body's ability to process, and use up fats is "heightened".


But even if that's not true, studies have shown that a high fat diet works for people with my condition, and I have shown myself that I can lose weight, even if I eat higher fat foods. So, please, anyone who reads this, don't come to me with your ideas about what I should eat. I've tried everything you can think of.


I will also point out that I had a cholesterol test done during this year. The result was a cholesterol level of 3.5 which is at the lower end of normal. Again, your too much fat argument is invalid.


That's another thing. People say to me "you don't have to eat take away though.. you should cook more". Ok yes. You are correct. But how many of you get tired from preparing something to put it in the oven, let alone bend down to put it in the oven?


I've had a lot of suggestions. And, I know they're coming from a helpful place, but again, it's coming from a place where people don't have to think about energy conservation within their own body. Someone I was talking to a couple of weeks ago suggested I cook all my meals at the start of the week, and that way I'd have enough food and wouldn't need McDonalds. This is absolutely true. But I don't have the energy to cook 14 meals, or 7 meals at once. Take away is easier than cooking. I know it involves driving and that seems counter-intuitive, but I know how my body feels, and when I'm feeling tired, driving is easier than cooking and preparing, because I drive more often than I cook. It's all about conditioning.


Incidentally, I've lost about 3 kilograms in a month, trying out this high fat, high protein diet. So it works.


The other change that I made in my diet is to allow for a certain amount of carbs every day. Originally I tried to cut out all the carbs, but I'd found that I was hungry a lot, and also I felt better once I began to eat between 100g and 200g of carbs a day. Really the only thing I worry about with my food these days is the quantity of carbs that I've eaten for the day.

The best example I can give you for this working happened a couple of days ago. Christmas day. I spent it with my Mum and her husband Joe. We had roast pork and turkey, vegetables, and some christmas desserts. There was some leftover pork, and Mum gave me some of it to take home for dinner. So, that night, my evening meal consisted of pork, and turkey. That's all. No carbs, just protein.


I managed to walk 15 minutes on my treadmill before the pain got to be too much. And that whole night, I ached more than I do normally, and everything just felt worse.


The problem is with protein, is that you absorb and use it all very quickly. There's no storing it for later. This is basically the crux of what makes my condition hard to manage, and also in some cases, so debilitating. Carbs are broken down into glycogen, which is stored as energy for muscles. My body doesn't do that, so I have to get energy from protein mainly, which does not store. Fat obviously does store, and I'm learning a bit about how my body uses that. My theory at the moment is that the reason I can lose weight with my diet, is because there's no carbs stored to be used as energy, and once the protein is gone, my body starts using the fats. For a normal person, the carbs would be basically the only thing used, and maybe some protein if they'd had it just before exercise.


So I feel like I've found a diet that works for me, and as long as I stick to my exercise, I will lose weight and reach my goal, which is that 100 kilogram mark.


The other main change that I've made is that I've totally cut out alcohol and caffeine. The caffeine is more to do with stress and anxiety issues, but the alcohol was for my condition. One drink and my arms and legs, and shoulders and neck all burn and ache, and I get really hot and red, and basically it makes me feel awful. But, aside from it being a lot better for my body, I also got inspired by a new(ish) hero of mine, a wrestler by the name of CM Punk. He lives a straight-edge life, which basically means no alcohol, drugs, or cigarettes. There's a bit more to it than that, but that's the basic idea. (for example, vegetarianism sometimes goes hand in hand with straight-edge.. but I can't do that, nor would I if I could). I'm not one of those preachy people who would tell you that you shouldn't drink because I don't, but I just choose not to put those things into my body any more. Everyone else's body is their own business.

The other thing that I wanted to write about in this post is pain tolerance. For a long time I've found it hard to understand, sympathise, even empathise with others when they are in physical pain. I'm sure this was just because of my condition, and being in a constant state of pain. Even as I'm sitting here, I have pains in my back, my jaw, my hands, and my eyes are a little sore. (Eyes have skeletal muscles, therefore are affected by my condition). I'm actually thinking about getting my eyes checked, just to make sure I'm not just fooling myself thinking that tired eyes are because of my condition. I can see everything fine, just not as clear as I should be I don't think.


But back to the pain tolerance thing. I can remember a lot of times my ex was in pain, be it a headache or a toothache, or some kind of pains in her leg or anything really, and I would make sure she was ok, but in my mind I would be thinking something along the lines of "Oh, you can't be in that much pain".. I had a real "suck it up" kind of attitude.


I'm not proud of that of course, but all I can say is that I was dealing with a lot of pain on a daily basis. I feel like that has pushed my pain tolerance way up, and what may be a 6 or 7 out of ten for someone else, would be a one or two for me. I handle pain pretty well, I mean, a kidney stone for me was about an 8, and it should be a 20 out of 10 from what I've been told.


I had a conversation with my Mum about this a couple of months ago. We talked about everything I just mentioned, about not being able to understand people's pain, feeling disconnected from it, feeling like they couldn't possibly be in that much pain, because to me it wouldn't be that bad. But, from talking about it with her, we figured out that the pain scale is a relative thing. Your four out of ten may be different from your best friend's four out of ten, but you still understand relatively how they'd feel. And to me, that was a bit of a revelation. Maybe I've just finally grown up properly though.


Wow, this is a long post isn't it? Ok I'm nearly done I promise. I mean, it has been 18 months, so you knew going in this wasn't going to be short.


The last thing I want to talk about is playing gigs. I'm actually hoping some of my new punk rock friends will read this, because it's quite hard to explain why I can't move in the back rooms of pubs and clubs with music blaring and people's ears already ringing from being on stage, and I want them to know why I leave early, and why I'm so exhausted after I finish playing. I swear, sometimes I must look like Meat Loaf after I finish.. I've heard he passes out sometimes.


I love playing shows. This last six months, playing shows with my best friend next to me, playing our songs we've spent multiple hours working on, refining, surprising each other with little ideas... it's simply amazing. And the reaction to our music has been 99.99% positive... ok there was one guy who called us lame.. but screw that guy.


But gigs are also the hardest thing I do. Again it's the little things that people don't have to think about normally, like how close the parking is, what time we're on vs what time we leave, how high off the ground the stage is (it's hard for me to get up onto high stages without steps, and even harder to get down), how long our set is, and, as I said in part two, crowds and things like that put me on edge a lot too.


I have the same issues with acoustic gigs as well, but to a lesser extent. We tend to have some longer breaks between songs, which sometimes annoys people I'm sure, but it's purely to give me a little rest so that I can play the rest of the gig.

I do sometimes feel bad though, when I'm playing full band shows, and we leave before the last band finishes. Sometimes we've left as soon as we finish playing. In fact, I remember one gig we played, Curt (my best friend) and I turned up about 10 minutes before we were supposed to start, so we walked in and walked straight on stage, played, and we'd left within 15 minutes of finishing the set.

Now, this is partially because we play a lot on week nights as we're just starting out, and Curt has to work the next day and we have to drive back to Ballarat from Melbourne, but it's also because I'm so spent physically that I can't stay. And that's what I feel bad about. We need to support each other as musicians, but I can't always. I also am not the most animated on stage, but that is simply to conserve energy for singing, which is what I find the most tiring.

I wouldn't change any of it though. I absolutely love the music we're playing. I love that it can be played acoustically, or plugged with a full band. I love that we have fans, and I love that I've made a whole new bunch of friends. The punk scene feels really inclusive. No matter what style you play, people are into it and are friendly. Aside from that one guy who thought we were lame.

The plus side is we have an awesome title for a new song. "Sorry for being so lame".



So that's it for this instalment. I'm considering starting a video blog, maybe once a week or something to talk about general issues and also give updates on my weight and band and what not.. but I don't know how much interest people would have in it. Let me know if that's something you'd like to see.


Thanks for reading, and as with last time, I'm sure there will be another part to this eventually.